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From the CEO’s Desk: Busy Season for Public Policy Kicks Into Gear

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The first quarter of the year for the National Brain Tumor Society (NBTS) – and any other organization engaged in proactive advocacy – is a particularly busy time in the area of public policy and government relations. While research initiatives often spillover year-to-year and remain ongoing (like our flagship research initiative, the Defeat GBM Research Collaborative, which is a five-year program), public policy advocacy operates in a much more cyclical pattern, with annual routines beginning at predictable intervals.

Finalizing the Annual Legislative Agenda

As a new year kicks off, we begin in earnest developing our annual Legislative Agenda, which will guide or public policy advocacy plans, strategies, and tactics to position us for the best possibility of success ensuring policymakers consider the needs of the brain tumor community over the next 12 months. In fact, just a couple of weeks back NBTS officially published our 2016 Legislative Agenda, which can be found here.

Appropriations Season

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NBTS advocates meeting with Representative Jim Langevin (RI) last June

Almost immediately after yearly legislative agendas are finished, we enter a period known in Congress as “appropriations season.” Appropriations season is the annual process whereby Congress and the White House begin to discuss the preparation of the federal budget for the next fiscal year (FY 2017). During this time, discussions amongst policymakers are held, followed by a series of draft budgets from, first, the president, and then Congress, that outline broad spending figures for major government funding areas (i.e. healthcare, defense, intelligence, social programs, education, etc.) Then, congressional appropriations committees begin the more granular task of setting specific funding levels for government departments, agencies, offices, and programs. To read more on this process, see this great explainer here.

Why is appropriations season important for a patient advocacy organization like the National Brain Tumor Society? This time period is the best opportunity to make sure lawmakers on Capitol Hill hear our priorities for the coming year and that appropriations (funding) can be allocated to pay for them. While this is a somewhat separate process from passing different bills we support in Congress (see how a bill becomes a law here) – like the Cancer Drug Coverage Parity Act, 21st Century Cures Act, and Childhood Cancer STAR Act – it still is critical for one key aspect of our legislative agenda: research funding.

In 2016, NBTS will seek to accomplish the following three pieces of our legislative agenda during appropriations season:

  1. Ensure the National Institutes of Health (NIH) – including the National Cancer Institute (NCI) and National Institute of Neurological Disorders and Stroke (NINDS) – are again funded at a healthy level that allows them to provide more research grants to scientists studying brain tumors. For example, it is because of federal funding that the Neuro-Oncology Branch of the NCI is available to patients and is conducting important research. And, in fact, advocating for the establishment of the Neuro-Oncology Branch was one of our first advocacy victories. In addition, the NCI provides core funding for a forthcoming “precision medicine” clinical trial that is studying pediatric gliomas, among other tumor types. NBTS helped advocate for the launch of this clinical trial.
  2. Ensure the U.S. Food and Drug Administration (FDA) is appropriately funded so they can more efficiently serve their function of approving drugs that can help extend patient lives and improve quality of life. Federal funding is essential to ensuring that the FDA is able to maintain its new “breakthrough therapy” program that looks for promising new treatments at an earlier stage of development. NBTS helped advocate for the creation of this program.
  1. Ensure pediatric brain tumors are once again included as an eligible topic for funding under the Department of Defense (DoD) Congressionally Directed Medical Research Program’s Peer Review Cancer Research Program. Last year, NBTS led a grassroots effort to ensure that pediatric brain tumors were included in the program and we’ll do it again!

We work to accomplish these items during appropriations season by directly speaking with Congressional offices; working with our various collations and alliances to advocate to key congressional committees and staffs; and asking YOU, our dedicated volunteers, supporters, and advocates, to reach out directly to your members of Congress and request their support of these items through our Action Alerts.

Head to the Hill 2016

In the first quarter of every year we also begin planning, and open the registration, for our annual advocacy day in Washington, D.C., Head to the Hill.

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NBTS advocates at Head to the Hill 2015

This year we are excited to have the Collaborative Ependymoma Research Network (CERN) Foundation joining us for Head to the Hill, where they will also hold their yearly Ependymoma Awareness Day event and butterfly release. We’re also excited to have the support in 2016 of the Society for Neuro-Oncology (SNO), the leading membership organization for neuro-oncologists, who will be encouraging their members to participate alongside NBTS and our patient advocates.

It looks like 2016 is shaping up to be the most impactful Head to the Hill yet!

New FDA Commissioner

On Wednesday, February 24, 2016, Dr. Robert M. Califf, formerly of Duke University, was officially confirmed as the new Commissioner of the U.S. Food and Drug Administration. In late 2015, National Brain Tumor Society signed onto a letter representing many patient advocacy organizations, and led by the group FasterCures, asking the Senate to quickly act on Dr. Califf’s nomination to lead the FDA. The FDA had been operating without an official commissioner since Dr. Margaret Hamburg left the post in March of 2015.

NBTS believes that in order to fulfill their critical role in evaluating and approving potential new treatments for brain tumor patients, the FDA needs to have stable, consistent leadership. A permanent commissioner is critical to the management and efficiency of the FDA, and Dr. Califf’s confirmation satisfies the need for stability.

NBTS congratulates Dr. Califf on his confirmation and we look forward to continuing our work with the FDA to help accelerate the development of new and effective treatments for brain tumor patients.


As you can see it’s been a busy start to the year (and will continue to be) for our Public Policy Advocacy program. To stay update on all the latest make sure you are signed-up for our Public Policy Updates, our monthly eNewsletter, our blog, and are following us on social media.

With Sincere Gratitude,

David F. Arons, JD

Chief Executive Officer

National Brain Tumor Society

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